Avantha

Spreading Hope Together An account of the efforts by Avantha Foundation’s ART Centre at BGPPL Campus, Ballarpur

Nature has answers to all our quests} HIVE. A place where the bees come to roost.

Where community bonds are strengthened.

Where relationships are reinforced. Where the swarm calls a home. Safe. Secure. Serene.

The hive is a symbolizes the immense possibilities that communities can accomplish by working together and creating a milieu which inspires each member of the community to work harder and discover his own future. At Avanta, we have built a hive for people infected by HIV, where the individual contribution of each member is respected and his self-esteem reinforced while also helping him/her take care of his health. At the hive, they rediscover hope and build a better future for themselves and the world.

At Avantha Foundation we believe in learning from the mother nature.

Nurture . Care . Cure }

We believe in affirming human dignity and is committed to the protection of fundamental human rights. We believe people living with HIV/AIDS (PLHA) have the right to be fully integrated in society.

We strive for non-discrimination in every facet of human enterprise regardless of HIV status, gender, sexual orientation, involvement in sex work, drug use, and religious, cultural or socioeconomic status. A hive of harmony.

Avantha Foundation recognises the need for coordinated programmes to alleviate the problem of HIV/AIDS. We believe in ‘spreading hope together’.

JOIN Hands Spread HOPE

hope. humaneness. happiness.

The human hand represents the interrelationships that binds all humanity. Our hands join in prayer, wave in celebration, salutes in honor, holds together to support, touches to convey feelings, care and emotions, extends to empathize and embrace with compassion‌Our hands have crafted all the marvels that we see around us; all the bonds and emotions we experience.

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At Avantha, we used our hands to weave back hope and happiness into the lives of those affected by HIV. We have used our hands to wipe away the pain and brush away the despair; held their hands and led them back to life. This volume is a compilation of some of the most inspiring tales of courage we happened to witness during the course of a year’s work.

Hold their hands. Help them hold on to hope, humaneness and happiness. In their happiness, we seek ours.

Avantha Foundation believes in restoring human dignity and is committed to the protection of fundamental Human Rights. We believe that people living with HIV/AIDS (PLHA) have the right to be fully integrated in society, and not be left at the fringes of it.

We strive for non-discrimination in every facet of human enterprise regardless of HIV status, gender, sexual orientation, involvement in sex work, drug use, religious, cultural or socio-economic status.

Avantha Foundation recognises the need for coordinated programmes to alleviate the problem of HIV/AIDS.

The HIV/AIDS pandemic Human Immunodeficiency Virus, HIV, is a virus that weakens the immune system, which if not treated in due time leads to AIDS - Acquired Immunodeficiency Syndrome.

Over 34 million people worldwide are currently living with HIV, and every day, 7,000 new cases are born.

Which means that 5 people are infected with HIV, every minute of every day. Since the first case of AIDS was reported in 1981, over 30 million people have died due to HIV/AIDS. In India, the total number of people living with HIV/ AIDS (PLHA) is estimated to be 2.39 million in 2009 alone. Children less than 15 years account for 3.5 percent of all infected, while 83 percent are in the age group of 15-49 years. Of all infected by HIV, 39 percent (930,000) are women.

The widespread incidence of unprotected sex, polygamous sex, mother-to-child transmission, drugs and substance abuse, poverty and sexual abuse all contribute to the high occurrence of HIV infection in developing countries.

3.5% Below 15 years 39% women 83% Below 15-49 years Age group of AIDS patients in INDIA

HIV Transmission, Testing & Treatment HIV is transmitted through exchange of blood or other bodily fluids such as semen. This exchange can occur through sexual intercourse, drug injection, breastfeeding or during pregnancy in cases where the mother is infected. However it cannot be transmitted through hugging, kissing, shaking hands or coughing.

HIV can be detected through several tests using blood or an oral fluid sample. In the developed nations, antiretroviral treatment (ART) is recommended immediately on being tested positive for HIV. A CD4 count is performed to determine the number of healthy T cells that are not infected by HIV. In developing countries ART treatment is only started when the patient’s CD4 count is substantially low (by UN regulations 350 cells/micro-litre). ART aims to check the replication of HIV in the body, to maintain a healthy immune system.

Antiretroviral treatment lasts for life. An HIV positive person who strictly follows the regimen along with the correct nutrition can stay healthy for several years.

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{ Goodness in togetherness

ART Centers & Access to Treatment

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According to National AIDS Control Organization (NACO) - Annual Report 2011, by 2010, 292 ART centers, 550 Link ART centers and 255 community care centers were operational in India with 384,726 cases on ART. However, in spite of government efforts to make treatment available, it is estimated that more than half of those infected still do not have access to the AIDS medicines that will keep them alive.

Avantha Foundation believes that treatment for HIV/AIDS is a fundamental Human Right, and is committed to providing life-saving treatment to those who cannot afford it. The Foundation’s ART Centre strives to give patients around the project sites access to free and comprehensive HIV/AIDS treatment along with personal care to lengthen their lives.

Nurture the fragile, with care and love.

BILT ART Centre, Ballarpur BILT ART Centre in Ballarpur, Chandrapur is one of Avantha Foundation’s primary HIV/AIDS treatment and prevention centre in India, providing out-patient services to people living with HIV/AIDS. The other centre is in Koraput, Orissa.

Located in the Nagpur division of Maharashtra, Chandrapur district has 18 big industries and 1205 small industries. A high HIV prevalent district with over 1300 positive cases (as tested in 2002-2006), Chandrapur professed an immediate want for an accessible ART centre. Until 2007-8, the nearest ART centre was 150 km away at Nagpur, flooded with patients from adjoining districts and from Andhra Pradesh, Madhya Pradesh and Chhattisgarh. As of December 2012, the Government-run ART centre at Nagpur has over 6000 registered HIV patients, with nearly 3000 on ART.

The ART Center at Ballarpur was started in 2007 to provide easy access for treatment to the underserved HIV+ population of Chandrapur & nearby districts.

The BILT ART Centre is run as a Public Private Partnership (PPP) model in collaboration with NACO, New Delhi and with technical support from the Confederation of Indian Industries, New Delhi.

Avantha Foundation through BGPPL provides space, HR, Laboratory equipment and medicines, while NACO provides ART medicines and training of HR. The ART centre is run as per NACO guidelines.

Be somebody’s life support. Rescue the afflicted.

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The ART Centre assists HIV-infected people who have little or no access to treatment and are reeling under the strain of poverty, stigma and discrimination. Located in BILT Unit campus, the Centre employs one full-time and one part-time Medical Officer, One counselor, Lab Technician and Data Manager. The Facilities include: • HIV Counseling & Testing • Anti-retroviral medication • Monitoring of patients on ART to assess suitability, side effects and adjustment • Nutritional and psycho-social support • Support groups • Community Outreach • Alcohol/drug abuse counseling • Crisis intervention for women • Educating on rights of people living with HIV • Data base development to track etiology and epidemiology Since 2007, more than 930 people have directly benefited from the Centre’s comprehensive HIV/AIDS care services. For in-patient care, the ART Centre clients are referred to the District Hospital or Christ Hospital, Nagpur.

1000

800

600

400

200

2007-08

2008-09

PLHAs under CoC

2009-10

2010-11

PLHAs on Art

2011-12

Total (since

0

project started)

PLHAs Registered

Age group of AIDS patients in INDIA

{ Companionship. Care. Compassion.

Continuum of Care (CoC) Launched in 2009, the ‘Continuum of Care’ project aims to provide a holistic package, which extends beyond medication to improve the health and focuses on the general wellbeing and the quality of life of patients. The project offers complete confidentiality, while providing a package of support services to PLHAs and their families, which are registered with the ART Centre, including: • • • • • •

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weight of patients has increased by 2.5 kg, Hb count to 3.3% and CD4 count to more than 20%.

The Continuum of Care is the first such initiative taken up by a corporate in India, and has become an integral part of ART Centre services. It offers a strong symbol of hope among PLHAs in and around Chandrapur.

Reduction of stigma and discrimination Home-based care and psycho-social support Nutritional counseling and support Alcohol and drug abuse counseling Income generation training & support Self Help Groups

The project was launched in partnership with two local NGOs – Bhartiya Adim Jati Sevak Sangh, (BAJSS) and Kiran Bahu Uddeshiya Gramin Vikas Sanstha Ballarpur – working on health and HIV related issues. Family Health India (FH India), Mumbai provides technical support for M & E as well as capacity building of the staff for both the projects.

This partnership ensures access to families and allows for the programme to be better accepted by the communities.

Indicators such as weight gain, CD4 count, Hb percentages etc reflect the change in the quality of life. According to the MIS report for 2012, the average

Hope. Upliftment. Freedom. Togetherness. Solidarity.

Buddy Programme under CoC Buddy is a person who is privy to the selective disclosure of the HIV status of a PLHIV. He/she is a source of support for the PLHIV in matters pertaining to treatment, monitoring, drug adherence, and emotional support. The buddy could be a close relative, friend or spouse of an HIV positive person.

The buddies may be HIV positive or otherwise.

Under the CoC programme, Avantha Foundation has trained 67 such buddies. The programme trains the buddy on the basics of HIV, personal hygiene and care of the PLHIV in case of an emergency.

The role and responsibility of the ‘buddy’ include: • Th e buddy should be faithful to the particular PLHIV. • Buddy should attend to the needs of PLHIV and take him/her to the doctor in case of an emergency • He/She should not disclose the status of infected person to any other person other than the doctor • Take care of his/her timely food and medication • Give psycho-social support to the client

Hold a hand, give them the courage to step forward.

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Kiran – ART Centre’s CoC Project Partner Mr. Govinda Wankar, a PLHA along with other eight PLHAs, established Kiran Bahu Uddeshiya Gramin Vikas Santha in 2008. Mr. Wankar is the Project Director and has two outreach workers. Kiran’s initiatives include: • Facilitating PLHA to register with ART center • Offering information on various government schemes for PLHA • Networking with other NGOs working with PLHAs • Forming SHGs among PLHAs • Organizing HIV awareness programmes

SHGs for PLHA Kiran has established seven SHGs for PLHAa in Ballarpur since 2007. Five SHGs were established under the CoC project. 62 PLHAs are members of the SHGs. SHG members meet once in a month at the ART center, in order to review the activities, accounts and monthly savings.

The journey cannot be undertaken alone.

Luck, uplift our spirits }

Impact of CoC Project

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Clinical • The overall health of patients has improved with consistent weight gain. An average weight gain of 2.5 kg is noted • Less than 5% PLHAs were away from work due to ill health in 2011-2012 • CD4 count registered an increase of 15 -20%.

• More than 95% drug adherence by nearly all patients on ART • Average increase in Hemoglobin percentage by 3.3% Social • More than 70% PLHAs have voluntarily disclosed their HIV status to family members. This has helped in acceptance of the disease by the family and reduction in the stigma faced in the society.

• Five SHGs were set up among PLHAs, to inculcate a habit of saving for contingencies.

• Initiation of income generation activities by SHGs such as envelope & paper bag making. Interest free loans were also provided for these activities.

• Vocational Training provided to 15 PLHAs on screen printing with the objective of setting up their own entrepreneurial venture.

• Nutritional counseling provided to more than 300 PLHAs during home visits.

• Nutritional support provided to over 150 PLHAs • Development of kitchen gardens by PLHAs

including a demonstration plot at ART centre, Ballarpur to stress the importance of proper nutrition while on ART. • O rganisation of a series of awareness programmes during World AIDS day in the communities, schools and colleges to reduce the disgrace associated with the disease.

• Providing access to legal and social support.

{ Stand up. Be counted again

Rock solid strength This is the story of Vimal Kongre, aged 62 and left to raise her grand daughters, both tested HIV positive, all by herself after having lost her son and daughter-in law to HIV/AIDS. She explains how the ART Centre and CoC helped in clearing her misconceptions about HIV/AIDS.

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Vimal Kongre, aged 62, is the paternal grandmother and the only caretaker of Sakshi and Pratiksha, aged 12 and 15 years respectively, who were diagnosed positive for HIV. She has been taking care of the girls since their birth, as her son and daughter-in-law were both tested positive for HIV about 16 years ago and succumbed to the disease.

The two children were tested positive for HIV, when they were 2 and 1 year old respectively. Since then Vimal has been taking care of her granddaughters spending exorbitantly for their treatment in private hospitals.

When the ART Centre was set up in 2007, Vimal got both her granddaughters registered; counselors Dhanesh and Sonali helped her understand HIV related problems, importance of medicine, nutrition and proper care. The CD4 count for both the children range from 525 to 550, hence ART medicines are not administered.

She also registered both the children with Kiran, benefitting from the support and motivation of the team members as well as CoC’s food and nutrition supplements. Vimal also deposits Rs.50 in SHGs for the elder one. She also earns by providing snacks for support group meetings at the ART Center. Today, her granddaughters have grown up and are able to manage things on their own.

Inspiring Confidence Kiran Yesambare, aged 32 and a mother of two, tells how COC and ART have been instrumental in improving her health condition and developing a positive attitude towards life.

Kiran Yesambare, aged 32, was tested positive for HIV in the government hospital after prolonged symptoms of fever, fatigue and weakness. Counselor Sachin Talwar referred her to BILT Art Center.

At the ART Center, she learned the importance of regular medicine as well as the need to improve personal health and hygiene. Her first CD4 count was as low as 30, but after treatment the count increased to 190. Her interactions with members of the support group, especially Mr Govinda Wankar, sharing their experiences and struggles helped her in gaining confidence to face the reality.

Both her children tested negative for HIV. Her daughter knows about her illness and is also aware that a person can acquire the HIV infection through contact. Kiran has also registered with the CoC project as well as its income generation programme.

Today she leads a happy life, feeling a sense of belonging because of the support groups at CoC.

Strong in the face of adversity This is the story of Ms Seema De telling how CoC and SHG helped her in building skills for income generation.

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Seema De, aged 30, and her husband got the shock of their lives, when he was tested HIV positive at the government ICT center. He was referred for an HIV test while he was getting his blood tested for a leg surgery.

An outreach worker in CoC project referred the two to BILT ART Centre. Their children were also tested for HIV - one son was found positive, while the second was negative. However, on examination it was decided that ART was not required as the CD4 counts were normal. They were advised healthy living habits for maintaining the CD4 levels to ensure a satisfactory immune system.

Seema then registered herself with CoC, where she received training in income generation activities like bag, file, greeting card making etc. Under the CoC initiative, she also visited Baba Amte’s Anandwan to see how the disabled and disadvantaged were engaged in various income-generation activities to support themselves. She also received financial assistance from the SHG to start a bag-making unit.

Today, she leads a comfortable life, sustaining herself and her family.

Living each day Shrirang Gorghate, a father of two, was in a state of fright when he and his wife were tested positive for HIV. He talks about how registering with the ART centre, meeting the counselors and medication has helped him recover.

A school dropout after the 7th grade, Shrirang Gorghate started working as a truck-helper, while also learning how to drive trucks. He then went on to become a truck driver, staying away from home for 8 to 10 days in a month. He married Sangita, an Adivasi woman whom he knew for a while.

Following prolonged fever and weakness, Shrirang was tested positive for HIV at the government hospital. He lost all hope after his wife was also tested positive for HIV. His elder son was also tested susceptible with sickle cells; only the younger kid was tested negative.

It was his wife who registered herself and Shrirang at the BILT ART centre. Shrirang was put on ART immediately. His CD4 count and health improved with medicines and psychosocial support from support group meetings at CoC and ART Centre.

Every month he also deposits a sum of Rs.50 into the bachat gaat (SHG) and is also registered with Sanjay Gandhi Niradhar scheme.

Mr. Wankar, CoC team and ART centre team have been very influential in helping Shrirang overcome his fears and also in improving the health of the family. Currently he is back working as a full-time truck driver, fending himself and his family.

A newfound respect for being alive This is the story of Sachin Kambale, a young PLHA who has emerged to face the challenges of living with HIV, with help from ART and CoC.

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Sachin Madhukar Kambale was working in Pune and staying with his friends, when he began to fall sick quite frequently. Following a diarrheal attack, Sachin returned to his native home in Ballarpur. There he was tested positive for both HIV and TB at a private hospital. He was advised to take rest for a few months along with proper medication.

However, on feeling better after medication, Sachin went back to smoking and alcohol. His illnesses recurred until finally he collapsed. He and his family members were shocked to learn that he would not live for more than two months.

It was then that Sachin’s father came to know of the ART center at BILT. Sachin was put on ART immediately. After continuous medication for one and half year his CD4 count increased up to 350 from 70 initially. He also started participating in support group meetings, gaining confidence through sharing experiences.

Through Kiran Bahu Uddeshiya Sanstha and CoC, Sachin also came to know of Sanjay Gandhi Niradhar Yojana programme. His exposure visit to Baba Amte’s Anandwan also impacted his outlook towards his life.

Today, his health has improved, helping him lead a happy normal life.

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Avantha Group Thapar House, 124, Janpath, New Delhi 110001 P. +91 11 23368332, 23368811